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Lymphedema Made It Hard for This Cleveland Mom to Heal from Breast Cancer - but After Surgery, She's Living Life on Her Own Terms

Published 1 month ago8 minute read

India Robertson Robinson, 43, thought she was just tired and stressed during the pandemic. But, Cleveland mother of three learned she had breast cancer. After surgery, chemo and radiation treatments, she developed lymphedema. She had surgery at the Cleveland Clinic and now, she feels like she has her life back. She shares her story with PEOPLE's Wendy Grossman Kantor.

I had my eldest daughter when I was 16, and became a doula when I was 18. One of the things that I prided myself on is that I breastfed all three of my kids for two years each; that was important to me personally, and as a doula, because I wanted to educate the community that breastfeeding is shown to reduce the risk of breast cancer.

During the pandemic I was a chief training and organizational development officer at a local nonprofit. I was having a lot of stress from the pandemic, and I just wasn't feeling well. I was getting my thyroid checked, seeing doctors, but ultimately I decided to quit my job. I need to take time to focus on my family. The pandemic was hard on all of us. I just needed a minute.

India Robinson

At a doctor's appointment in July 2022, they were like, “You didn't go for your mammogram because of the pandemic. You're 40 now. You should go ahead and go get that mammogram.”

It was my absolute first mammogram, so I didn't really know what to expect. A few hours after I got it, I had a notice that I needed follow-up imaging. A few hours later, they called me said, “Hey, we really do need you to come and get these images taken”

Doctors did an ultrasound and scheduled biopsies in multiple areas for October 24. I was like, ‘Oh, that's inconvenient. That's not going to work for me. My birthday is October 25th,’ and she looked at me and she was like, “We're going to do it on October 24th ... You'll be fine.”

It never crossed my mind, not for one second, that I was going to be diagnosed with breast cancer. The next day, when I got the call telling me "You have breast cancer," I just let out a scream, and I don't even remember what happened for the next hour.

I was just screaming and crying. I called my mom and she couldn't even understand me, I was just so hysterical. She called my sister. My sister came to my house, and we just sat and cried in the front yard on the porch.

I was diagnosed with stage 3 cancer, an aggressive-growing tumor. I did the genetic testing — I had no markers, no family history. I never felt a lump. None of the doctors ever felt a lump.

But there were signs well before. One of the main signs for me was that I did have drainage from my right breast. And because my daughter was pregnant with my grandson, I thought that the drainage was me having sympathy milk. And when I was not feeling well and I quit my job, and the endocrinologist said my white blood cells were off and they couldn't figure out why, we know is because I had cancer.

India Robinson and Keneifa Thomas.

India Robinson

I had surgery on November 15th to remove the tumor. Even between the time when they first saw it and when they removed it, it had already grown. Because it was fast growing and it was very close to my lymphatic system, we knew right away that I would have to go through chemotherapy, remove lymph nodes, go through radiation. They did tell me right away that I would have some damage through my body from all these different things. And because I'm young, that I would really have to go through a lot to make sure that I had a good prognosis moving forward. I had to play a lot of catch up. It was a lot of YouTube videos.

My best friend who I met in college, Keneifa Davis, was also diagnosed with breast cancer, a month and a half into me starting chemo. She actually lived with us for a year while we were both going through it; we call it the apocalypse of 2022 because it was so stressful. She needed support. I needed support. And so it was really us leaning on one another.

I wrapped up chemo in March and started a lot of radiation, which gave me burns — you're burning from the inside out.

India Robinson cancer treatment.

India Robinson

Then my lymphedema started. My left arm started to swell. By April, my right breast, which was the impacted breast, it was the size of Dolly Parton's breast. It looked like I had a huge implant in my breast, and every day I was just in so much pain.

I went for a deep tissue lymphatic massage to get the tissue to go down. We're just talking about boyfriends and what we're doing on the weekend, but she's literally having to massage my breasts, standing almost on her knees on the table.

The occupational therapist would get the fluid out. I'd say, "Oh, that was great. I feel better,” but by the time I got home, 10 minutes away, I could feel the fluid starting to go back in. And then I would send her a MyChart message, “It's coming back,” and she would say, “I'm so sorry. I just don't know what to do.”

India Robinson cancer treatment.

India Robinson

With cancer, what happens is that the radiation and the chemo and the surgery just damages your body. And that caused my lymphedema. For some people, this pain becomes a part of their life forever; what generally happens is the fluid gets stuck in your arm, and that heaviness in your arm can cause scar tissue and scarring. Once you have the lymphedema for so long, you tend to just have a big arm. I didn't let it get that far.

My lymphedema manifested itself in a unique way in that the fluid wasn't just stuck in the arm. It moved between my arm and my breast. If you pushed it out of the breast, it went into the arm. If you pushed it out of the arm, it went into the breast. It was flowing. And if they pushed it out of both, it went somewhere, but then within an hour it would come back.

The surgeon I saw at the Cleveland Clinic put infrared dye in my lymphatic system, and he was able to watch where it went, and he could see exactly where those blockages were on this screen. He used a micro robot to actually rebuild my lymphatic system. The surgery in July 2024 took almost 10 hours. By rebuilding the lymphatic system and opening those blockages, the fluid could actually go out of my body.

I feel like I got my life back.

I actually found an engagement ring when I was going through chemo in January 2023, and when I asked my boyfriend about it, he told me that he was going to propose on my birthday the year before, but because I had just the biopsy the day before and was diagnosed, he said, "It just didn't feel like the right time." His mother had just died the year before from breast cancer, so it was very difficult for him.

In the end, Anthony Robinson and I got married 4-24-24. It was an all-pink wedding for breast cancer awareness.

India Robinson wedding photos.

Natasha Herbert Photography

I want women to know that there is life after cancer. I'm back at work. I believe in the work that I'm doing. I love the work that I'm doing. This is my purpose. I'm good at this work, and I don't need to be too stressed out. I advocate for people.

I'm not working in cancer; I'm not there yet, because I am still traumatized by cancer. Breast cancer was traumatic. Maybe one day, but just not right now. I have had people who say, “Oh my gosh, you are so amazing. You should a hundred percent work in this breast cancer support group.”

I'm traumatized. I can talk about it sometimes, but sometimes I just cry. Sometimes when I talk about it, I'm not okay.

India Robinson wedding photos.

Natasha Herbert Photography

It's one of those things that forever impacts you. I think that that's really important for people to understand is that it's okay that it impacted you, and it's okay that it made you cry. And it's okay that you're different. And some days I didn't want to talk. Some days I talk too much, but however it changes you is okay. And if you're different afterwards, that's okay.

I had balloons at my wedding. I love balloons. And if I would've gotten married before having cancer, I probably would not have done that because I would've felt like it wasn't appropriate. I wanted to have balloons because they represented who I really am. And instead of having a flower girl with flowers, I had her walk down the aisle with these huge, 24-in. balloons on rhinestone chains.  I just did everything the way I wanted to do it because there are no rules to life.

I am taking a lot of naps. I am giving myself more grace. I do understand self-care a lot more now than ever before. I think we all should. And that's the main thing. 

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